How fast does PA progress?

[crazyme]

Hi, all

I'd like to introduce myself. My name is Dawn and I am 38 yrs old. I found this wonderful website after my doctor told me he thinks I have early onset of PA. I have researched a lot on the web but I have found that the true experts are people in this forum. I was hoping that I could get some opinions...

I have had p since my teen years. I now have it on my elbows, my ears, my toenails, and various other places. I would consider it to be pretty mild because most of it is hidden (except for the elbows).

About 20 months ago, I woke up to find 2 fingers (ring and middle) swollen. In a matter of days they were 'sausage' like. I have a history of repetitive motion issues so I chalked it up to a strain of some sort. It wasn't really painful; just swelling. About a month or so later, I became pregnant. After a few months when the swelling really didn't go down much, I asked my OB/GYN what it could be. He said it is normal carpal tunnel symptoms that is common during pregnancy. I was skeptical since it started before my pregnancy but I ignored it anyway. Eventually, the swelling went down.

I would say that my fingers (and all pregnancy related swelling) was completely gone by the time the baby was 4 months old. However, I began feeling really, really achey. My back pain just didn't seem normal and wouldn't heal. Then I thought I broke my toe (even though I couldn't recall an injury) because my toe swelled up and I was limping. Then when I woke up one day to both of my index fingers swollen like sausages, I decided something bad was going wrong. There were days that I really struggled to get out of bed and taking care of 2 boys under the age of 3 was near impossible. Everyone kept telling me that having 2 kids was wearing me down but I knew that this was not normal. In a matter of months, I was limping, swelling, and could barely move around. It was continously getting worse even though I was trying to take it easy.

I surfed the internet and found that I was displaying classic pa symptoms and with my p history as well as the 'pitted toenails', it seemed likely. I went to my doc. He said that it is a 'clinical diagnosis' but wanted to run tests anyway. While I have classic symptoms, my x-rays are normal, my white blood count is normal, and my sed rate is low. RA and infection were ruled out. Doc says he didn't expect to see anything yet since it so early...He still thinks I have pa and is referring me to a Rheumy. In the meantime, I am on Naproxen (2-500mg/day).

Naproxen has helped with the pain, but the swelling is still here. It will be several weeks until I can see the Rheumy and I am on pins and needles over this thing. I am always so exhausted at the end of the day but I don't know if this is in my head...I'm concerned about my future but don't know if I am overreacting.

My question is this... This thing has hit me like a freight train but none of my tests are showing signs of joint degeneration disease. How likely is it that I have pa? Is it possible to be experiencing these symptoms without the joint damage present? Also, I am concerned because I read in a post that the joint degeneration could occur in a matter of 4 months. Is this so? If yes, then am I just masking the pain with NSAIDS and shouldn't I consider a disease modifying drug?

This message board is great. I came here looking for technical information but I found that it is also a great place to talk to people who are going through this as well. No matter how much I talk to my loved ones about it, they just don't understand what it is like.

Thanks for listening and I would appreciate any guidance you can give me.

[lulu'smom]

I too had P for a long time. My PA started after the birth of my 2nd daughter. It was a milk achiness in my back, but within a couple days I couldn't lift her into her crib and I also couldn't lift a gallon of milk from the fridge. My pain is mainly spondiliytis type (back/spinal pain) with some referred pain in my right wrist.

I just want to let you know that I too had a very fast progression, like within days. I'm on Humira now, and it is helping. I also found taking a nsaid like Naprosyn around the clock helped a lot.

Good luck!

Nancy

[LoriASoCal]

I wish I could be of more help. Like P, PA seems to vary in severity to such a degree that it's difficult to predict what it will be like for any individual. I have had PA since my late teens. It's been mostly mild with occassional severe flair ups, until the last few years where it seems just about uncontrollable. I have been on MTX for 17 years and credit it for keeping me out of a wheel chair. I'm sure better informed people will come along to help you soon.

In the meantime welcome.

lori

[MikeK]

Hi Dawn,

I don't think that we've me so let me take this opportunity to welcome you to the Board! :cool: Nice to meet you. I'm greatful to your derm for suggestion that you become part of this wonderful community, but I'm sorry to hear that you might have PA.

One of the most frustrating things about both of these diseases is that everyone is different. Take me for example. I'm 49. I was first diagnosed with psoriasis when I was 7. I was diagnosed with PA when I was 47. Both diseases are very mild. Fortunately for me, but very furstrating for my rheumy, my PA is also intermittent.The flares -- and the symptoms -- come and go. My last major flare was around this time last year. I went out with a friend who also has PA. I was in such bad shape that I had trouble keeping up with him. I made an emergency appointment with my rheumy. The flare was over so by the time that I got into see him (which was just a few days later) so there was very little that he could do for me. When I was first diagnosed, my PA affected only three joints -- my right knee, hip and foot. (My hip gives me the most trouble.) I recently started having problems with my right big toe and with my right elbow. The thing that has me the most worried is that I'm losing strength in my right arm. Even though I'm left handed, we live in a right handed world and once simple things such as opening a child proof bottle are becoming increasingly difficult. Fatigue is also a problem. Until now, my symptoms have been so mild and so intermittent that the only treatment that I use is to take an Advil as needed. I haven't had to take an Advil in several weeks. If more joints become affected, I may have to explore other treatment options.

Since your doctor referred you to a rheumy, I'm going to give you a link to a "must read" post by JesseLou. She discusses the questions that must be asked and the tests that must be ordered whenever PA is suspected. Here's a link to her post: http://www.psoriasis.org/forum/showthread.php?p=74786&highlight=question#post74786.

I hope this helps.

Good luck. Keep us posted. Let us know if you have any other questions and please don't be a stranger.

Mike

[tmartha]

Welcome, Dawn. I'm 37 and diagnosed almost a year ago, pain for a year before that. (unless I count all the times of plantar fascitis in the years before...which my doctor seems to see as a pre-cursor) My pa has primarily been in the hips, shoulders, feet and ankles, now the back.

Glad you're going to a rheumatologist - he/she is the only one who can tell you how likely pa is in your case, and help find your diagnosis. It's great that your regular doc knows about pa and directed you to a rheumy, now make sure he/she is open to lots of questions and takes time to listen and answer. (I bring a list every time. My doc expects and encourages it)

This is my understanding of where the pain comes from at this stage in the game with inflammatory arthritises (learned from my rheumy - I am not a doc!) - like you, my xrays right now show only normal slight wear and tear. The pain at this stage is not from joint degeneration but rather from inflammation of the synovial fluid surrounding the joints. Pa pain can also be from enthesitis, which is inflammation of the tendons or where soft tissue connects to the bone. The faulty immune system is overactive and attacking these areas. If the inflammation is not treated, then degeneration (with its own pain) will follow. If the immune system is hit with dmards or biologics, calming everything down at the root of the cause, then the possibility of slowing or even stopping the progression of the disease is a real one.

This is simplified - but really, it's not simple. (As you've already suspected I'm sure.) Finding the right med or combination of meds can take some time. But you're on the right track. Hopefully this helps. (If I didn't get it right, I trust someone will tell me! :) )

Living with the pain and the limitations that pain presents is a whole other story, and with two young ones it must be even harder...being proactive about getting info and getting the right diagnosis is good medicine for starters, so good for you! Look forward to hearing more from you -
Tani

[RichJ]

hi dawn,
welcome to the p family. you have met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you.

have a good day all

richard

[crazyme]

This has been really helpful. I'll keep you posted.

[crazyme]

Does anyone with PA struggle with the 'sausage digits'? My two index fingers are so swollen I think they're gonna burst. :( Today one of them even looks like it's turning purple. Is this normal? Well, I guess none of this is normal, is it? Dumb question. :)

I am on Naproxen but it doesn't seem to be doing anything for the swelling and pain in my fingers.

The pain is spreading quickly to my other foot now but it feels more like a tenderness in the heel where the other foot felt like a broken toe. My right foot was throbbing earlier under the big toe but I think the Naproxen has kicked in.

My left shoulder and lower back is also sore but I do pick up the boys a lot so who knows about that...

I am trying to get in to see my Rheumy but he has to look over the paperwork that I faxed to him on Saturday first and then they will call me to schedule an appt. I'll be in a wheelchair before I get there at this rate. I think it would have been easier to get an appt with President Bush. I guess I have to get used to this whole new world of drugs and doctors...

Thanks for letting me complain. I am struggling both physically and emotionally with what is happening to me. I am on pins and needles waiting to get into the Rheumy to see what he says. Whatever this is, I just hope that he will give me something for the swelling as that is bothering me the most.

BTW-- MY MIL told me this weekend that it couldn't be PA because I am too young. I guess she got her MD when I wasn't looking. OK, cheap shot, I know. It just was not the right thing to say to me this weekend.

[Nasus]

Dear Crazyme

I am a 45 yr old mom and was diagnosed with PA 6 months ago, only because my knee specialist was stumped on why me knees (with previous injuries and surgury) swelled up severely overnite with no injury. I could hardly walk and the pain. Yuk Painkillers helped me sleep.Sent me to Rheumatologist same day. Takes a while to narrow it down. I am now on Methotrexate and Humira shots and it is now stopping the damage and pain. The damage done to my knees in this time is incredible. Also is in baby toe joint and fingers. Inflammation is worsening my carpal tunnel. You must treat PA agressively in the beginning or the damage is done. Now I live with the limitations from the damage. Pursue diagnosis quickly. I was extremely tired from all the inflammation. Could barely stay awake after dinner. Feeling somewhat better now.

I found this site today. It is so great. Good luck and keep me posted.

[jj4mm]

Hello Everyone,
I'm new to the board as well. I was diagonosed with p and pa about 18 months ago. once i found the right meds, the joint swelling went down. i get occasional flare ups that sometimes last only a few hours, but the pain can be very intense. fortunately i don't have any joint damage.

my biggest problem is fatigue. i can't seem to get enough sleep. does anyone have any suggestions? there are only so many hours in a day to sleep!

thanks for all the great advice i've found

jennifer

[meghan_e]

BTW-- MY MIL told me this weekend that it couldn't be PA because I am too young. I guess she got her MD when I wasn't looking. OK, cheap shot, I know. It just was not the right thing to say to me this weekend.

So sorry to hear how tough things are for you right now. I had to respond when I saw what you're mother-in-law said. Age has nothing to do with arthritis!!!!! Babies and children get arthritis. She is confusing osteoarthritis (bone degeneration usually associated with wear and tear over time (seniors)) with about 100 other forms of arthritis. http://www.arthritis.org

Since you're not seeing a physical therapist right now, here's a suggestion that generally holds true when it comes to swelling; mainly it's this: Make friends with ice.

For the sausage digits, it might help to dip your hands in cold, cold water for 5 or 10 minutes. Whatever is comfortable for you. That always helps my swelling. For other areas like knees, ankles, elbows, etc, rub ice directly on the swollen areas for 5-10 minutes as well. If any of it feels dreadful, then DISCONTINUE IMMEDIATELY.

At some points, my joints were sensitive to cold if the whole joint was surrounded with cold. But an ice cube directly on painful spots felt marvelous.

Since you don't have a definite diagnosis yet, do what you can to make yourself comfortable. Take it as easy as possible. Get plenty of rest.

Hope you get in to that rheumy soon!
Best wishes,
Meghan

[crazyme]

Thanks everyone. I will definitely try your suggestions.

I am feeling fatigued as well. Guess its the swelling. Or it could be that I'm staying up late to check this message board. :)

Good night...

[tmartha]

Welcome, welcome Jennifer! You will find great support and information here, this forum is such a huge help.

Fatigue is a common thread with this disease - you'll see many people talking about it. One of the best things you can do is make yourself aware of what wipes you out. i.e. Shopping is horrible for me. Long walks on cement floors = ouch. We live far away from stores so I'd always combine errands and do way too much. I'd crash afterwards for the night and the whole next day and maybe longer - sore, achy, tired, and achy again - FINALLY over Christmas I realized I JUST CAN NOT DO SHOPPING THAT WAY ANY MORE. (I say it in all caps because I have to keep telling myself that firmly, with emphasis!) I thought I NEEDED to do it that way, well, I didn't. My body needs me to use it wisely, and that need is greater. If I can't add one more stop to the trip, and we're out of toilet paper, well, we're just switching to kleenex or napkins until hubby gets out to get some! lol

Even though my body had been forced to slow down in some ways, this was only one of many ways that I was still pushing myself too hard, without realizing it.

Be good to yourself, and know it's not laziness (my own negative mental tape) - let us know how you're doing. (If you start a new thread, you'll get more answers! :) )

[RichJ]

Hello Everyone,
I'm new to the board as well. I was diagonosed with p and pa about 18 months ago. once i found the right meds, the joint swelling went down. i get occasional flare ups that sometimes last only a few hours, but the pain can be very intense. fortunately i don't have any joint damage.

my biggest problem is fatigue. i can't seem to get enough sleep. does anyone have any suggestions? there are only so many hours in a day to sleep!

thanks for all the great advice i've found

jennifer
hi jennifer,
sorry i can't help much but welcome to the p family. you have met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you. i get fatigue alot to.

have a good night all

richard

[JesseLou]

Dear Crazyme - If you read some of the info on PA here on this site, you'll find that you have all the classic symptoms of PA, so though I'm not a doctor either, I'd say your diagnosis is a slam dunk.

Naproxyn only reduces inflammation, and therefore swelling and pain. That's good, in that the inflammation does cause damage. But it won't do anything to slow the progression of the disease - that's what DMARDs do.

Progression from joint to joint is different for different people. The rate of damage is also different for different people. You can also read about the 3 different types of PA and how each progresses: one of them is responsible for the most damage to joints.

It is my own experience that the joints that had been affected by PA before I began methotrexate are the ones that still cause flares. The difference on MTX is that the flares are further and further apart, and no new joints have been affected since I began taking it.

The other part of it that tmartha explained very well, enthesitis, is, I think, harder to control, and what causes people the most pain. It too is inflammation, and any inflammation, but especially in the soft white tissue of the tendons and ligaments, causes muscle weakness and strain on other muscles in the body. And all of that translates to more pain.

You might push that rheumy a little by calling the office and telling them you are experiencing rapid progression to other joints - and name the joints you're talking about. You might also try to get your other doc to push for an early appointment.

[tmartha]

Crazyme - as Jesselou says, I am also concerned about the quick progression, so wonder if you've been in to a rheumatologist yet. Any luck? Be persistent, be a pest, have someone else (irate husband?) call on your behalf...(ok maybe that's not a good idea :) Then again, maybe it is....I'll keep that one in my back pocket, too...)

Truly concerned - wishing you support and strength -
Tani

[PJ66]

Crazyme,
I hope you can get an appt soon. I had the sausage toes and fingers 6 and a half months ago. My pa was progressing fast. I tried all kinds of NSAID's. None of them worked. I finally gave in and decided to try enbrel. The swelling is gone and so is my p. I still have days that I hurt a little but no swelling. And I still get tired at times. You need to find the right thing that works for you.
Polly

[crazyme]

Hello, everyone

Thanks so much for your support. sorry I haven't kept up. It's been crazy. I went to my Rheumy yesterday and received the official diagnosis. He is starting me on sulfasalazine for the pain and swelling. If I tolerate it well and my white blood count doesn't drop we will try it out for 2-3 months. If I'm not 'back to normal' within that time, we up it to Methotrexate. He disclosed that sulfasalazine isn't as aggressive, but he felt that it is still mild right now considering the number of digits involved. We will follow up with x-rays after 9 months to ensure that progression isn't masked by the meds. He actually gave me the option of trying Methotrexate vs sulfasalazine and I chose the latter due to the low side effects. Also not crazy about blood tests every 6 wks. What do you think? should I have taken the aggressive route?

[Petdoc]

I think that you chose the right drug to start. It seems the most benign as far as side effects. Plus, if it works, then you still have the other drugs in your back pocket if you need them. From reading the other posts on this site it seems that people have a lot of side effects with the Methotrexate (severe fatigue and elevated liver enzymes). I am on Enbrel and love it (but of course there are some pretty scary possible side effects for the biologics too!!).
Basically, you will have to see what combination works for you.

Good luck!

Megan

[jdeldrid]

I was diagnosed with Psoriasis about a year and a half ago. This summer, which my husband and I spent travelling the Pacific Northwest on our boat, my knee started to swell. I "knew" what it was, but wasn't in a position to deal with it, so I ignored it to the extent I could and took a whole lot of aspirin. Later in the summer, the pain in my hip got so bad I was needing to take Vicodin to sleep. Cruising involves a lot of walking -- to get groceries primarily, it seems -- and being quite physically active. This trip was a dream we'd worked 6 years toward, and I was dammned if I was going to let my body wreck it.

Well, in retrospect, perhaps I should have, or at least delayed/shortened it, as my husband asked me to do several times. Enbrel is working wonderfully on all of my joints save the knee where I first developed PA. That joint is apparently permanently damaged -- while Enbrel stops the swelling and further deterioration, x-rays show the bone in that joint is terribly damaged. I had no idea it could progress so fast.

IOW, my message to anyone who doubts the need to treat this agressively and fast is that yes, you need to deal, right away.

Is there any way you can get into your rheumatologist on a cancel list or something like that? Ice does help, in the interim, although my dermatologist said to always wrap a plastic bag full of ice in a towel or T-shirt -- apparently, if you're icing various body parts on a regular basis, you can build up tolerance to the cold to a point where it's possible to give yourself frostbite, of all things, if you put ice right on your skin. That probably wouldn't be an issue with the "rubbing with an icecube" methos that someone suggested above, though.

[patti2957]

Welcome Dawn, though, like the others, I'm sorry for the reason why! It's amazing how PA can progress so quickly in some, and be arrested in others before damage starts. I'd like to hear from you, and anyone else who has tried sulfa - any luck? What about side effects? I wonder why my doc started me on mtx instead of trying that first, especially since now, after a year, I still have such problems with fatigue, though it does control the arthritis. I don't have joint damage either, which made it very difficult to convince myself that I really needed those pills - early on, so hard to adjust. I'm wondering if, now that I'm on Humira, if I might switch to sulfa, since it's milder...
any thoughts?
patti



Hello, everyone

Thanks so much for your support. sorry I haven't kept up. It's been crazy. I went to my Rheumy yesterday and received the official diagnosis. He is starting me on sulfasalazine for the pain and swelling. If I tolerate it well and my white blood count doesn't drop we will try it out for 2-3 months. If I'm not 'back to normal' within that time, we up it to Methotrexate. He disclosed that sulfasalazine isn't as aggressive, but he felt that it is still mild right now considering the number of digits involved. We will follow up with x-rays after 9 months to ensure that progression isn't masked by the meds. He actually gave me the option of trying Methotrexate vs sulfasalazine and I chose the latter due to the low side effects. Also not crazy about blood tests every 6 wks. What do you think? should I have taken the aggressive route?

[crazyme]

Hi, Patti

The only thing that I can think of is that I only have about 5 joints involved. He seemed to think that under 5 joints is pretty mild. Perhaps your Rheumy was more concerned about progression. My Rheumy said that the sulfa... is not as aggressive and may not work as well for the arthritis itself. Plus there is a high incidence of intolerance due to nauseau. But I figured I could at least try it out before going to mtx.

I take my first pill tonight. I'll let you know if my stomach tolerates it.

good luck

[janelee]

. I'd like to hear from you, and anyone else who has tried sulfa - any luck? What about side effects? I wonder why my doc started me on mtx instead of trying that first, especially since now, after a year, I still have such problems with fatigue, though it does control the arthritis. Any thoughts?
patti
.
My doctor said in the beginning that he thought I would have to switch to mtx...but wanted me to try the sulfa first. My rheumy also does studies and documents cases on what drugs work best etc. Is there anyone on here that has had good results with the sulf drug?

[crazyme]

I wonder why my doc started me on mtx instead of trying that first, especially since now, after a year, I still have such problems with fatigue, though it does control the arthritis. I don't have joint damage either, which made it very difficult to convince myself that I really needed those pills - early on, so hard to adjust. I'm wondering if, now that I'm on Humira, if I might switch to sulfa, since it's milder...
any thoughts?
patti

Patti,
I forgot to mention one thing. My rheumy also said that if my psoriasis was worse, he would have bypassed the sulfa and put me on mtx. Apparently, the sulfa doesn't do anything for p so I have to see a dermie. The mtx is supposed to treat both p and pa. Hope this helps. I took my first sulfa pill several hours ago and so far no nausea. Yeah!!

[ouchyk]

Dawn, Janlee & Patti,

I have a friend who takes suflasalzine, I will ask her to post tomorrow, she's doing terrific on it. No side effects what so ever and it's kept her PA in check.

I, on the other hand.... :p ......it made me seasick and I stopped it after about 10 days-2 weeks. For some reason my rheumy started me out on 2 pills per day. My stomach seems to be super-sensitive to sulfer meds.

Dawn, Hope it works wonders for you and glad it didn't make you nauseated!

Keep the faith!
Karen :)

[crazyme]

So far no nausea on the sulfa. But I am in extreme pain. especially in the mornings. 2 really bad days in a row. i was also exhausted yesterday although i don't see how it could be from sulfa so soon. i think maybe it is a combo of depression and pa. i am sinking into a feeling of hopelessness. i think the term 'chronic' is finally hitting me. i can't wait 6 wks for the sulfa to kick in as my productivity is slipping. wondering if i need to boost up my naproxen dosage. i have objectives with work that have to be met and i am going on business the week after next to give training presentations to our sales team. i fear i cannot handle it as i am going downhill. i was also planning to take next week off work as a vacation because my sitter can't watch the boys but i don't know if i can handle the babies by myself the whole day while hubby's at work. I need my MILs help but I don't think I can handle her telling me her horror stories of child rearing to convince me my life isn't so bad (she was a stay at home mom and didn't have a disease but somehow it was worse for her...) i hate this disease. did anyone suffer from depression after diagnosis? what did you do to combat it? i haven't told my boss about my pa as i work from home and feel it is my personal cross to bear. but i'm afraid that my output is going to slip until these drugs start kicking in. is it wise to tell him now or only if i start slipping?

Please tell me it gets better after the meds kick in...

I'm sorry to be a downer this morning but I don't have anyone else to talk to.

[patti2957]

Bless your heart; I've only been dx-ed for one year but already passed through the initial stages of disbelief, depressed grieving for the letting go and for having to ask for help, seemingly one loss after another. But then, the light does emerge and it isn't always bright and sometimes appears to be attached to the front of a locomotive, but this is a process and it is a wake-up call. There must be some areas in your life that you're pouring so much into that your immune system hasn't been able to keep up. I'm not saying this is caused by stress; the p is a predisposer as is our entire history. But, stress is a big trigger. Fatigue is REAL and it's from the illness, the meds, the depression doesn't help, but I have days that I feel very content and chemically balanced and still fatigued... it's just part of this gig.
I think we need to call on help and be vigilant about where we air our grievances - here, for example, especially with a one-upper around (mil) to always make you feel stupid on top of guilty on top of depressed.
Sorry to be so blunt, but it sounds like you need someone who can relate and believe me, I can. You need some advice from someone who knows you and your abilities and how you're impacted by this PA-crap. For me, the answer was a run on prednisone, which allowed me to function at a near-normal level while waiting for the meds to kick in. You will probably end up needing mtx, and perhaps a biologic to help with the fatigue. Humira is supposed to do that and I've done 4 injections and tapered down to 9 mg. of prednisone and battle fatigue but not nearly as bad as before; at least I can have a day to be tired after instead of starting at the bottom of the mountain every hour.
Hope some of this helps; please get help even if it means ear plugs, and keep posting so I (we) can know how you are!!
blessings,
patti

[lulu'smom]

I too really battle the fatigue. I am in my 3rd week of Humira, and finding it getting a bit better. I also was extremely depressed after my diagnosis last year. However, when the biologics started working, I pretty much forgot (yes, that is right?!?!?!) that I had/have PA.

When I had my recent flare, and now 3 months of severe P and 1 month of PA with fatigue... I am depressed again.

I find that no one but my husband really understand the disease, and he even doesn't "get" the fatigue part.

I hate the comments that are like what your MIL said. However, they are very common.

I'd tell your boss, if you feel your performance is slipping. I had to recently because I was scheduled to work at a trade show for 3 days out of town. I couldn't imagine how my lower back would feel (that is where I have joint damage) after 3 days on my feet on concrete floor. He was very understanding, and we compromised with my schedule.

I too work at home, so I was able to hide this for a long time. However, I felt better just talking about it. Even if he really didn't understand what my condition is...

Good luck!

Nancy

[janelee]

Alright Missy.....I think it's time to call the doctor and tell him/her ALL of this. Maybe the doctor can give you a steriod boost or something like that to get you through this pain. You are not a burden on this forum. I have not been here long but everyone is so understanding. I CANNOT imagine having to take care of small children during a flare....You really have a lot on your plate right now and you need to get some help. You need to tell MIL that it is not the kids that you can't handle...it is the pain that you are in. If she could just help you until your meds start helping it would be wonderful. Isn't it strange how people think their situation is the same as yours when they don't even have PA? I ran into that this a.m. My MIL called this a.m. and wondered why I was at home. I told her that I was going to get an injection for my neck. She said...well you really need to get a memory foam mattress...I said I HAVE ONE...well you are just too young to have all these health problems. I just wanted to say...yep...BUT I DO. Please talk to him especially about the depression. It is very important. My Psychiatrist told me that he would not even consider getting me off the antidepressants until the pain from the PA was under control. If your rhumey cannot get you help for the depression....go to a doctor that will. I actually prefer a Psychiatrist.

[crazyme]

You guys have been great. I feel much better this evening. Just a roller coaster ride. The sulfa is upsetting my stomach a little now but not so bad that it's an issue. I am trying to remain positive. I was so busy today that I didn't focus on the pain so I think that keeping my mind busy will be a good thing. Glad to know my MIL isn't the only one that tries to solve problems. Wouldn't it be nice if we just needed a memory foam pillow? :)

Tomorrow is Saturday. Yeah!!!!

Have a great weekend!

[smsspeech]

In response to your message, I think it might be helpful if we share our research for matress and pillow types. I am not connected in any way with any certain product and in fact if we don't indorse a product name-just a description, our input might be appreciated more genuinely! My husband and I use an airfilled/memory foam mattress.We got a generic, off the internet. IT IS WONDERFUL ! Also, I Use 3-yes three, latex foam pillows. One for each side and one under my head, Helps with balance,support..Wonderful !
Good Luck,
Susan

[janelee]

Crazy...I am glad you are feeling better. I was thinking last night that maybe a few days a week you might could find an older teen to come in and help you. Just a thought....
.
As far as pillows...hubby and I went and got us a feather pillow and it works wonders for my neck. I have heard that buckwheat is also good. We paid quite a bit for them...but it was well worth it to me. The only problem was hubby laying down in the store to test his out! I wanted to crawl in a hole!! geez....gotta love those hubbies....

[tmartha]

Crazyme - I'm glad you wrote - was wondering how you were doing. And Nancy - you too! :) And Patti, Janelee, Susan, Karen, jdeldrid - good to hear from all of you, too - great input, I again marvel at the connections, the articulate, intelligent, kind, firmly helpful people here...

I agree with Nancy that telling your boss is a good thing - it sounds like you've got a position of some significance, therefore he/she already knows your value. That value has not changed, you are not a lesser employee because of PA. But you may need to alter your schedule for a while until your disease is managed. My point is this.....if you had a heart attack your boss would not give a second thought to your needing to take some time off to recuperate. For that matter, neither would you.

Oh. Interesting. I had not looked at it this way for myself before. !!!!! I was thinking of it from an employer's perspective - having 30 employees, one who just had open heart surgery, one who is dealing with emotional issues, etc. A valuable employee is just that, and that's HUGE in this day and age. If you prepare yourself to educate your boss and be matter of fact about what you need to do to get better, any half-decent employer should be able to accomodate this (and is legally obligated to, another reason to disclose your disease before performance DOES suffer). Arm yourself with info from your doc - and don't fret that going to him about your health problems is whining. This is simply a fact that you (and therefore he too) need to deal with. (Now I will contemplate that myself....)

jdeldrid (did I get that right?) - thanks for sharing your tale - I wish I had taken my PA more seriously a year ago too. Well, I was in pain, the rheumy dx'd it, but I was in denial and kept toughing it out, I didn't switch to a dmard until Jan. It has helped a LOT. But my right foot/ankle has lingering (permanent?) pain/limitations.

Re: mil and other unhelpful people - so many just have no clue about a chronic painful disease or what to say to you about it. Educate her (again, in a matter of fact way) if she can be, or else avoid her when you can. I found myself avoiding one couple when I kept getting comments like "Going home early AGAIN? Party pooper!" and "Why didn't you come over with your husband? Not good enough for you?" ok, the guy was the worst offender, the wife just non-supportive (just?!). Anyway, I just didn't have the energy for that kind of crap and after having explained it more than once, why try? We didn't argue, I didn't get pissy (can I say that here?:) ) but it wasn't a healthy relationship for me so I just wanted to stay away, and did. Recently, the wife said, "It's been a really hard year for you with your arthritis, hasn't it?" Some dawning of understanding....I know a mil is a more complicated relationship and wish you luck (can tell you've already got strength) in dealing with it..... :(

Well, sorry so lengthy, you see I can identify just a teeny bit.....

Hope you all are well this weekend...
Tani

[patti2957]

http://www.psoriasis.org/forum/showthread.php?t=17267&referrerid=51792

Now's a good time to take a look at this post: back in...late summer we had a conversation about dealing with people who don't understand, even if they say they do... heads nodding, pats on the back, sympathetic glances, and stupid words, the kind that can sink in and work on you if you don't have your shields operating. Think Star Trek - warp speed - away! Even if it's just your mind, while your body pretends to listen:)

This is a great post; it has helped me so much this past few days...
blessings,
patti

[crazyme]

Re: mil and other unhelpful people - so many just have no clue about a chronic painful disease or what to say to you about it. Educate her (again, in a matter of fact way) if she can be, or else avoid her when you can.Tani
Tani,

This is so true. I'm reading a book called 'How Full Is Your Bucket?' by Tom Rath and Donald Clifton. It discusses filling your bucket by surrounding yourself with people who make you feel positive and avoiding situations that deplete your bucket. I started to realize that I should just avoid the topic of PA when I am around those who don't fill my bucket. I love my MIL dearly and she is a great woman. But tough love is her thing and right now that doesn't make me feel very good. For example, she called me today asking for an update. I explained in factual details how PA is similar to RA (her sister-in-law has horrible RA). Again, she stated to me that RA is much worse than PA because her sister-in-law has to take injections. UGH! I explained AGAIN that the injections are Humira and/or Enbrel and that they are used for PA as well. Oh, well. That is fine. I just cannot talk to her about it because she will ultimately tell me that I'm 'not so bad off'. Without realizing it, she is making me feel like I am exaggerating my illness. I just plain give up. On the other hand, my hubby has done a 180. He has been helping me out a lot physically and emotionally. He is filling my bucket. And, of course, you guys fill my bucket as well. I will try to do the same for you.

Patti: your link to the previous post is great. I can definitely relate.

Dawn

[patti2957]

Just came from dinner at my mil's and she said that my weight gain (15 lbs of pred cushion - picture a chipmunk wearing a life jacket) would have probably happened anyway, because age does catch up with you. I was a size 8 until December. Now a 12. She gave me an Easter dress that is a 2-pc. very colorful, nice outfit and I told my dh on the way home that if it looks good on me I'm jumping (off a cliff). It's a size 14.
I am going to make a doc's appt to have my hormones, thyroid, etc. checked and make sure all this bloat isn't from anything else. And, I keep telling myself, I'm tapering off and it will go away, one day. What is it about one day? Why always a different one than the one I'm in.

Wow, this is a whine and a half post, if anyone reads, Dawn, Janelee, Susan, Nancy, Karen... forgive me. I have been keeping the faith and maintaining such a positive attitude; think I may have had a blowout:)
As time for Humira approaches I get more tired and achey by the minute. Thursday can't come soon enough!
Thanks for listening guys,
patti

[patti2957]

Dawn - the book you mentioned in your reply to Tani... sounds like a good one. Any more info on it? I've got a great one called When The Body Says No, Understanding the Disease Stress Connection. A PA-bud in New Zealand sent me excerpts and I wish I could read it cover-to-cover as fast as I bought it:) It's it's by Dr. Gabor Mate, if anyone's interested.
best,
patti

[ouchyk]

Oh please ~ I put the " W " in Whine!

I know people who have RA, my aunt is one. Every disease has a different level of severity, RA included. Everyone deals with it differently too, some of us are more " vocal " than others and that's fine!

Arthritis is painful period. I don't care what kind it is.

It can be frustrating when you haven't found the right treatment, or when you think you have, you take two steps forward and one back & this can be really tough, especially when people don't understand.

There are people in this world that will never understand and after a while you have to let it go. The heck with them, why waste your time & energy. I know this is hurtful when it involves a family member, you would hope for a lil more compassion and understanding.

I so agree with Tani, when you stop showing up for gatherings when you don't feel well enough or have to leave early maybe then she will understand. But, then again, when you start Humira and it works wonderful on you....you might not have to go there. :)

If you were positive all the time, I would think there was something wrong with you lol. :p We all have our moments, even people without PA!

I think you're doing great! You're being pro-active and taking action with treatment. You're not sitting back and letting this overcome you, you're seeking out avenues to help yourself.

Sometimes all you can do is to take it one day at a time, one hour at a time, or five minutes at a time.

How many hours till Thursday lol.?

Hang in there, thinking positive for you, so you can have a break!

Karen

p.s. I bet when you completely get off prednisone that weight will come right off too, you might have to work a lil at it and I'm glad you'll be checked for other factors as well.

[emarie]

Hi everyone - I haven't been on the past week much because I have been very sick with a cold and horrible cough. I guess it takes longer to heal now.

Crazyme - I just went through the most horrific experience in my career. I have been at my work for 39 years and made it to Senior Vice President. I felt valued, etc. until about three months ago, when I started feeling like my boss was out to get me, and everyone else with her. I have been so wrapped up in trying to keep my job and keep up with doctor appointments, etc. that I have gone into a downward spiral. I cry at the drop of a hat, I am anxious all the time, I do not sleep, I am tense and scared. I am down right depressed. I have a very stressful and very busy job. Until now I have always been able to keep up with it all. Lately I have been slipping. I feel like I cannot do everything as good as I used to so everything is suffering. My boss gave me a bad review as a result. I was furious. I filed for FMLA over a month ago because I thought I might not be able to continue to keep up. So far I have made up all the hours that I miss three days a week with so many doctor visits. We had a discussion with our Human Resource Manager. I finally broke down and told them more about the disease and what the last year has been like. I also told them that I believe my depression may be linked to the start of Methotrexate about three months ago. I was never like this before (so sensitive). Crying is a sign of weakness where I work. My HR manager has suggested that I take some of the FMLA time and work things out, perhaps with a change in meds, or seeing a counsellor. I am afraid that I will get passed up for two potential promotions if I take the time. I also won't be doing my job. This is a dilemna.


I see my derm tomorrow morning. I am going to discuss it with her. I am also going to ask to see Alice Gottlieb, who now runs the department where I am seen. Maybe she will review my file and tell me what to do. I need a doctor note to take the time off. I hope someone will give me one. Anyone have any words of wisdom? I could certainly use the help of all my new friends.

[ouchyk]

e-marie,

I hope your derm will be helpful.

You are meeting with one of the best derm/rheum/researcher in the country. She is one of three in the US, who is all of the above. As you know, she is kind, compassionate, down to earth, has a great sense of humor, and most of all knowledgeable. I hope that she'll look things over with you. She seems very open and approachable. I had a great chat with her in DC. I know you did too.

Ask for that note, I'm sure either doctor will be happy to oblidge you. I would also see about short term disability until you have all your answers and are on the right medications that will help you. The best thing that you did was to file for FMLA, now you're protected.

Crying might be a sign of weakness in the paced corporate world, but its also a valid human reaction to frustration anger and depression. Not to mention possible side-effects of medication. Factor them all in together and I'm sure most of us who suffer can understand.

Being a woman in the corporate world at the high level that your at can be tough enough, it's so dog eat dog out there. Factor in an auto-immune disease and it makes it all that much harder.

It would be a much different world if we all had auto-immune disease, I'm sure your boss would see this side of things if he or she were to suffer. I know that you're doing your job as best you can, if you were any better organized at CHD I think they would have asked you to run it lol.

I don't have any words of wisdom for you, but I do want to wish you the best of luck. And I hope that you're feeling better soon and can get rid of that nasty cold.

Tomorrow is a new day, time for answers and direction. Insist on this.

Please let us know how you make out.


Hang in there,
Karen

[patti2957]

sorry emarie:
when I read your post I realized that, although my whining had a humorous edge, there are people who are Really suffering. I cannot imagine working in an environment where who you are doesn't matter as much as how much you do. It sounds like you were a pioneer when you had your breakdown in HR; hopefully paving the way for the next person with an illness to step forward and say, I'm sorry you can't have the pound of flesh this week, can you settle for 3/4? It makes me spitting mad to think about the ways people in high positions fuel their egos, which are nothing more than hot air balloons, which is why they have to keep pumping so hard. If someone comes along and poses a threat - real or perceived - either their response has all that roiling air behind it (picture a dragon) or the whole thing comes down. I was very accustomed to working with men who were emotionally juvenile, having put all their energy into their careers. I don't know why I should think it's more a shame for a woman to do the same, perhaps I believe we have that something extra that prevents that switch from being flipped. Are there other reasons why they might not be in your corner you right now? If you do get a promotion, will you be able to keep up then? Are there other options you haven't had a chance to explore because you've been so busy trying to cover all the bases - in pain and probably more fatigued than anyone can imagine. I think you have a lot of questions that need answering, in a loving, positive manner.
I hope this isn't too radical; I am a feminist but strong enough to love and appreciate men too, it just pisses me off to see you in such a hard place.
There are absolutely no words of wisdom here, other than, YES, you need to take a bit of time to rest up and assess the situation from a distance; perhaps with the support and advice of a counsellor and others who know and value you.
Please do keep us posted.
Best Wishes,
patti

[crazyme]

emarie,

I feel just awful for you. You have obviously worked extremely hard and you are a tough cookie to have gotten where you are in your career. I know that you are getting down on yourself because I've been there too. I had carpal tunnel creeping up on me many years back (now we know it may have been arthritis). I was always one of the most productive employees in the company. But when I physically couldn't keep up with the production environment due to my symptoms it was amazing how fast people turned on me. Especially because I had to file a workers comp claim according to the company nurse. I hated to do that but it was job related due to the typing. The doc put me on 'light duty' until the symptoms cleared. I was humiliated that my employers were trying to find photocopy jobs for me to handle because I couldn't do anything else. I had people tell me that it couldn't be carpal tunnel even though the specialists said it was. They made a workers comp nurse come with me to the doctor and she was challenging his diagnosis. He all but yelled at her right in front of me because she was acting skeptical. I have a strong work ethic so I was humiliated. I became paranoid and felt that everyone thought I was lazy, that I was faking it, and that I was worthless. Having a lot of pride in my work, I became so depressed that I went on Prozac for 6 months. It was the worst time of my life. My self esteem was destroyed and I was embarassed that I couldn't step out of the depression on my own. Eventually, the Prozac helped and I applied for another position that didn't involve so much typing. Thus, I moved on to bigger and better things.

So you are not alone. I know that you will pull through this. You are going through an extremely difficult time right now. You deserve to take a break and heal both physically and emotionally so that you can regain your strength and come back stronger. It sounds like you are just plain exhausted trying to keep up. Having a high profile position like yours is challenging anyway without having a disease. Glad to hear you are doing FMLA. Forget about the HR incident. I've seen a heck of a lot worse. You are fine. Shame on your employers for treating you this way with all of your years of dedication. If you were getting the respect that you deserve, you wouldn't feel so bad. Time for you to take care of yourself and forget about them for awhile. Please let us know what your doctor says. I'll be thinking of you. Hang in there and post when you need some encouragement. We are here to listen...

Patti: Your book sounds like a good one. I definitely have to get it. I am about 1/3 through mine. So far it is pretty easy reading. I'll let you know if I get any more good tips from it. I'll give you the cliffnotes. :)

Take care, everyone
Crazyme (Dawn)

[tmartha]

Dear emarie - I'm so sorry you are going through such a horrific time. You can't help that you've got this terrible disease. I wish I could help you strangle your stupid boss. :o If you do end up taking a leave, and miss promotions because of it, I have a strong hunch there'd be many (smarter, more compassionate) businesses who'd snap you up in a heartbeat. What a dilemma you have, but I hope you put your health - physical, mental, emotional - first. I'm glad you're seeing your derm and hope you can see Dr. Gottlieb soon, too - please let us know.

It's so hard when we have a setback, we can't do what we'd planned - that took the wind out of me this past year. But the definition of a setback is it's not forever. The downward spiral will stop, it has to. Then you see what direction you want to go on the way up. You're a woman with great smarts, ability, strength, compassion and you've triumphed before - you will again. (and again, and again.......)

I spent the last year working so hard to tough it out, keep working through the pain, prove to myself I could do all the same physical things - then I realized just how poorly I'd been doing my job (restaurant owner). And I felt so stupid! Everyone else could see I was slipping, but I was keeping my head down and 'working' and ignoring the reality. At this realization I felt on such shaky ground - I thought I'd have to get out of the business entirely. Now I'm rewriting my job description and better things are happening. It's not easy, but it's better (and more productive) than what I was trying to do.

I know my experience is not the same as yours, but the feeling of your world crashing around you because of this disease just might be similar. Wish I could help more - I'll be thinking of you.

Dawn - I think worker's comp people seem to be known for being horrible - my dad had a nasty head injury at work (barely came out of it) and was never the same again, had to re-learn many things, and the workers comp people kept acting like he was FAKING IT. I hear you. Also, my mouth dropped when you said you're reading 'How full is your bucket?' !!! I read 'Now, Discover Your Strengths' by Buckingham and Clifton and your book is one of the companions to it! I'm now reading 'First, Break all the Rules' (which I was supposed to read first but I broke the rules :) ) - that one is re: management, and the Strengths book can be used regarding mgmt or, mostly, where you're at in life and where you want to be. Anyway, thanks for recommending the 'Bucket' book - I'll have to read it for sure now. The 'Strengths' book has been a huge help and eye-opener for me ever since I read it and took the online test a couple months ago. Did you read that one too?

Well - I'm thinking of you all. I hope you write soon, emarie. And Dawn, keep us updated, too. All of you, please do! I never dreamed there'd be such a great group of women I'd connect with on these boards! Wow -
Tani

[lulu'smom]

Just came from dinner at my mil's and she said that my weight gain (15 lbs of pred cushion - picture a chipmunk wearing a life jacket) would have probably happened anyway, because age does catch up with you. I was a size 8 until December. Now a 12. She gave me an Easter dress that is a 2-pc. very colorful, nice outfit and I told my dh on the way home that if it looks good on me I'm jumping (off a cliff). It's a size 14.
I am going to make a doc's appt to have my hormones, thyroid, etc. checked and make sure all this bloat isn't from anything else. And, I keep telling myself, I'm tapering off and it will go away, one day. What is it about one day? Why always a different one than the one I'm in.

Wow, this is a whine and a half post, if anyone reads, Dawn, Janelee, Susan, Nancy, Karen... forgive me. I have been keeping the faith and maintaining such a positive attitude; think I may have had a blowout:)
As time for Humira approaches I get more tired and achey by the minute. Thursday can't come soon enough!
Thanks for listening guys,
patti


Patti! I know how you feel! I'm totally losing it this week too! Not due to bloating (except PMS, LOL) but my 2 girls have been sick. I've been caring for them for 3 weeks straight (first my 6 year old had an undiagnosed kidney infection with fever for 14 days!) and now my 20 month old has that fever, throw up, diahreah virus!

It is such a grind. Up at 5:30 with the young one, stiff, sore, red and exhausted... DH leaves soon after, and I'm at home inside all day with at least one sick kid til DH comes home at 7. He wonders why I'm cranky! I clean, ache, care for kids etc. My "bucket" is so empty!

I can relate! Sometimes the only thing that makes me feel good is coming here! Thanks for that all of you! :)

[lulu'smom]

emarie! I just wanted to send you a big cyber hug. I hope things are getting better. Maybe a change of meds, and a very short amount of time off will do you wonders. I hate that this disease is affecting so many aspects of your life! HUGS!


Nancy

[crazyme]

good morning, gilrs

I definitely have to get the 'strenths' book. Sounds like a really good one. Hope you are all doing well. I overdid it yesteray (the weather was so beautiful). I have vacation from work this week so I took my 2 year old to the zoo. Had a great time but I could barely walk afterwards as my feet were so swollen. I'm trying to learn my new limitations. have to keep this short as my fingers hurt too much to type. I am wondering if the sulfa... is counteracting wih the naproxen. I've had a setback since taking the sulfa. More swelling, pain, etc. Anyone heard of a dmard making the nsaid weak? Just wondering...

emarie: Hope you are feeling better.

lulu'smom: How are you handling the 2 sick kids on your own? I feel for you. I have 2 young ones too and it is sooooo hard some days. I can't imagine having them both sick. Hope your kids are doing better. Try not to get the flu yourself. My hubby gives me the same unsympathic crap at times. If I had the power to have him be me for a day....:) Wouldn't that be so cruel but so funny at the same time?

Dawn

[seedoubleyou]

Hi Dawn: Karen ("ouchyk") told me about your post yesterday and asked if I'd share my experience with you.

Below is a link to another thread about sulfasalazine -- in the interest of time, I'll just refer you there instead of repeating myself. The only things I'd add to what I shared in that thread are --

#1, the no appetite side effect has improved somewhat; & ...

#2, I DO continue to experience substantial swelling & stiffness in my right knee. Had a severe injury on New Year's; swelling was so bad I had to keep the leg immobilized/elevated/iced for 2 weeks before the surgeon was able to accurately assess it ... then, MRI ... then surgery on 2/2. I had high hopes that SX would relieve the edema/effusion but no such luck. I'm just now starting to walk again and the swelling & stiffness continue; I see surgeon again on Monday and will inquire about draining it. GRRRRRRR!!

I've also experienced problems with circulation & hypersensitivity in that leg & was DXd a few weeks ago with Reflex Sympathetic Dystrophy; apparently this is more commonly experienced by arthritis sufferers (especially with one of the inflammatory varieties). I refused the RXd medication (Neurontin) in hopes that gradual progression from non-weight bearing to partial to full (where I'm at presently) would help the problem. I think (wishfully, perhaps??) it's improved -- the circulation, at least -- but again, I see the doc on Monday so we'll see what he thinks.

I wish you great luck with the SSZ. :) My rheumy DID say to me at my last visit that I was his only PA patient that had done so well on this particular TX regimen (SSZ + Celebrex + OTC NSAIDs) so evidently my experience isn't necessarily the "norm." I AM very glad he suggested increasing the dosage to 3G/day before adding/trying another med!!

One more thing -- my labs are done every 3 months; so far, so good.

Here's the link to the previous thread I mentioned:

Sulfasalazine (http://www.psoriasis.org/forum/showthread.php?t=18429&highlight=sulfasalazine)

[lulu'smom]

lulu'smom: How are you handling the 2 sick kids on your own? I feel for you. I have 2 young ones too and it is sooooo hard some days. I can't imagine having them both sick. Hope your kids are doing better. Try not to get the flu yourself. My hubby gives me the same unsympathic crap at times. If I had the power to have him be me for a day....:) Wouldn't that be so cruel but so funny at the same time?

Dawn

Thanks Dawn! It's so nice when someone relates!

The girls are both healthy for the first time in 3 weeks! I had a fever yesterday, but I went to bed last night at 9:30 (in a huff because DH didn't understand why I was just so tired!).

My solution to my exhaustion and frustration this weekend is to do at least 3 things for ME... gym, massage and pedicure. I'm lucky, my PA is just annoying and noticable but not debilitating (Humira has really helped) and my P is good enough that I'm going ot let it show! - big deal for me!

Hope we all feel good and rest this weekend.

Nancy

[patti2957]

Nancy:
I recall (faintly) the days of really young children (mine are almost 9 and 10-1/2) and the illnesses that never seemed to end; I just can't imagine it WITH PA. Oh, my. It's hard enough when they can do a few things for themselves (read: very few:) but I really feel for you. And, what's up with DH? I swear, people who think they go someplace else to work have it so rough. Aside from Elaine, most of the time they have it easier!
Keep your chin up!
patti



Patti! I know how you feel! I'm totally losing it this week too! Not due to bloating (except PMS, LOL) but my 2 girls have been sick. I've been caring for them for 3 weeks straight (first my 6 year old had an undiagnosed kidney infection with fever for 14 days!) and now my 20 month old has that fever, throw up, diahreah virus!

It is such a grind. Up at 5:30 with the young one, stiff, sore, red and exhausted... DH leaves soon after, and I'm at home inside all day with at least one sick kid til DH comes home at 7. He wonders why I'm cranky! I clean, ache, care for kids etc. My "bucket" is so empty!

I can relate! Sometimes the only thing that makes me feel good is coming here! Thanks for that all of you! :)

[lulu'smom]

Nancy:
I recall (faintly) the days of really young children (mine are almost 9 and 10-1/2) and the illnesses that never seemed to end; I just can't imagine it WITH PA. Oh, my. It's hard enough when they can do a few things for themselves (read: very few:) but I really feel for you. And, what's up with DH? I swear, people who think they go someplace else to work have it so rough. Aside from Elaine, most of the time they have it easier!
Keep your chin up!
patti

Thanks Patti! It is totally exhausting. We're now in the clear after 3 weeks of sickness.

I think that DH is just tired of being around a depressed person. He totally understands the pain of psoriasis, pa but he isn't feeling it himself day in/day out. Sometimes I have to remind him of how I feel. If I don't get enough of an outside outlet for my anger/stress/sadness over this, I overwhelm him with too many complaints..

I'm off now for a massage! Nervous about the therapist thinking my skin is gross, but excited for the massage itself! :)

Nancy

[janelee]

Oh my goodness. I have missed you all this week. Had to go out of town on business and and been really busy since I have returned. I have not read all of the posts above but here is a big hug to you all {{{{{{ALL OF YOU}}}}}}}
Okay....over the last few years I have decided that NO job is worth my health and if those folks can't understand your illness...there are many others that will. HOWEVER.....they better be very careful....There is a disabilities act they could come and bite them in the butt if they don't treat you right. I don't have time to find it just yet....and I have to go out and run some errands...but I have many more thoughts. Of course....my main concern is anyone with depression. Because I suffer from it and my son does also...I think it needs to be treated. My meds Lexapro and Wellbutrian...keep me very leveled out. They are a Godsend to me. I will be back later to chat with you!!!

[crazyme]

Hi Dawn: Karen ("ouchyk") told me about your post yesterday and asked if I'd share my experience with you.

Below is a link to another thread about sulfasalazine -- in the interest of time, I'll just refer you there instead of repeating myself. The only things I'd add to what I shared in that thread are --

#1, the no appetite side effect has improved somewhat; & ...

#2, I DO continue to experience substantial swelling & stiffness in my right knee. Had a severe injury on New Year's; swelling was so bad I had to keep the leg immobilized/elevated/iced for 2 weeks before the surgeon was able to accurately assess it ... then, MRI ... then surgery on 2/2. I had high hopes that SX would relieve the edema/effusion but no such luck. I'm just now starting to walk again and the swelling & stiffness continue; I see surgeon again on Monday and will inquire about draining it. GRRRRRRR!!

I've also experienced problems with circulation & hypersensitivity in that leg & was DXd a few weeks ago with Reflex Sympathetic Dystrophy; apparently this is more commonly experienced by arthritis sufferers (especially with one of the inflammatory varieties). I refused the RXd medication (Neurontin) in hopes that gradual progression from non-weight bearing to partial to full (where I'm at presently) would help the problem. I think (wishfully, perhaps??) it's improved -- the circulation, at least -- but again, I see the doc on Monday so we'll see what he thinks.

I wish you great luck with the SSZ. :) My rheumy DID say to me at my last visit that I was his only PA patient that had done so well on this particular TX regimen (SSZ + Celebrex + OTC NSAIDs) so evidently my experience isn't necessarily the "norm." I AM very glad he suggested increasing the dosage to 3G/day before adding/trying another med!!

One more thing -- my labs are done every 3 months; so far, so good.

Here's the link to the previous thread I mentioned:

Sulfasalazine (http://www.psoriasis.org/forum/showthread.php?t=18429&highlight=sulfasalazine)

seedoubleyou: Thanks so much for the info. Karen, thanks for thinking of me. Again, you guys are always so helpful.

lulu'smom: I understand about the DH. Got one of my own that gets frustrated as well. I try not to complain but it is so hard. Especially on those bad days. I'm jealous about the massage and pedicure. I have p on my toenails so I have avoided a pedicure. I might just suck it up and go. I thought the same thing about the massage. But it would be so worth it. I am in desperate need of one right now.

janelee: I have to go on business this week as well. I hate travelling. I miss my kids so much. Plus my co-workers don't know about the pa (we work from our homes). I'm embarrassed about my sausage fingers, p, and my limping. Hopefully it will be a good week next week and I can hide it. I have to get to a derm before summer. Since the pa, I have noticed that my p is worsening. New spots on my elbow and back. I also have it on my earlobes really bad. Cracking and bleeding. What a joy. Sigh.... thank goodness for this post. At least I know I'm not alone.

Enjoy the rest of the weekend everyone.

Elaine: If you are reading, hope you are doing well. I'm still rooting for you. Keep your chin up.

[janelee]

I hope your trip goes well. Please tell us about it when you return!!

[Ihurt]

Elaine: If you are reading, hope you are doing well. I'm still rooting for you. Keep your chin up.

Im glad you are cause I could use as much of the cheering squad as I can get lol. Be well my freind!

Elaine

[crazyme]

Hi, folks

I'm back. Traveling was tough and exhausting. Pain is worse. Going to the base of my skull now. There are 2 round knobs that are extremely tender to the touch. Are these joints? Guess I'm not up on my anatomy. Ha,ha.

Sulfa is kicking my butt. I have morning sickness all over again. Called my Rheumy and left a msg for him to call me Monday. I am not having fun with this. I know it hasn't been 6 wks yet but the progression is quite frightening. And my shoulder hurts so much. Woke up at 5:30AM in excruciating pain. The pain going through my shoulder, up my neck is scary.

Hang in there. Spring is coming!!!

[lulu'smom]

Welcome back! Travelling can really make it tough. I hope you feel better soon. Sucks that the Sulfa is making you sick. Not really an improvement huh?

I wonder if the knobs at the base of your neck are lymph nodes? Have you thought of gettin ga massage? i just did this week and it did wonders for my neck pain.

Hope you feel better!

[RichJ]

hi crazyme,
welcome back and sorry to here your don't feel good. i hope you feel better tomarrow. i wish you the best

try and have a good night all

richard

[crazyme]

Hello,

Yeah, I was wondering if maybe it's a lymph node. They feel better today. I was reading again that the drugs can take several months to start working. I guess I have to suck it up.

[tmartha]

Glad they're feeling a little bit better, Dawn, and I hope you will have the chance to take it easy and recuperate from your traveling this week. I was feeling so good last week, and walked around a trade show one day, traveled to the city twice (2 1/2 hours one way), shopping with my daughter, multiple meetings, etc. for five days straight - on the 6th a PA bud said, "aren't you exhausted?" the answer then was not too bad, but then the four days since have been, well, I feel rather useless. And I'm just going with it, taking it slow as much as I can.

Dawn, just don't let sucking it up get in the way of getting help you need - we can be famous for toughing it out, and if taken too far everything gets that much worse. There are short-term meds and solutions to help until the sulfazine really kicks in. And are you still sick from the sulfa? Have you heard back from your doctor yet?

A good illustration of the lymph node system (meaning, where exactly those nodes are located which might help you in determining if your bumps might be lymph nodes or not), is at the nih medline site. I'll look up the address and come back to post it, I don't trust myself to be able to save this while I do that......:)

And if they are still painful, call your doc! I get sick of calling mine (and worry they get sick of me), plus some times I've encountered an unhelpful nurse who makes me feel like I SHOULD just tough it out (once my doc asked for that nurse's name and gave me the help I needed). But your pa is not managed yet, and it's going to take lots of calls and visits and figuring to get things under control. And any bad flare warrants a call/visit, too.

Ok, let me find that site....

[tmartha]

http://www.nlm.nih.gov/medlineplus/ency/article/003097.htm

....but the illustration isn't so comprehensive of the neck. I often have two swollen lymph nodes on the back of my neck, on either side of those cords (can you tell I'm not a medical person) that run down along the spine, and those ones, for instance, I don't see in the pictures. Sorry!

[jakesangel]

Dawn, I would like to say a big Thank You for starting this thread! I have never read so many different stories from women in one thread that I can totally relate to.

You girls have given me hope to make me feel that I am not insane and that I am not alone in feeling like family and friends just don't understand PA and how it wrecks havoc on your body, when you can't see it. Like that saying goes, just because I look fine, doesn't mean I feel good. There is a major battle going on in our bodies that really and truly no one can understand but the ones that suffer with it.

My P/PA started at the age of 29/30 during the pregnancy of my 3rd baby. It began with the psoriasis, and then by the end of the pregnancy I couldn't walk hardly and it didn't get better after delivery. I had a hard time lifting the baby, the washing detergent, A LOT of the same things some of you girls mentioned. I had shoulder and MAJOR hip pain. The PA I have is mostly in my spine and hip area and it affects how I get around sometimes when I am having a flare.

I am now 31, and it took me 3 rheumatologists and a a good MRI to get the proper diagnosis and treatment. I still have flares every now and then, and right now is one of those times. Currently I am taking MTX and that has given me a lot of relief.

I will have to say one of the things that bothers me most about this disease are the ups and downs. When I feel like I am in total remission, my kids are happy, and my hubby is happy, and that makes me feel great. When I start to flare, I see the worry on their faces, and it's almost like their heart is breaking because they are losing a piece of me. It takes away my energy, my strength, and the active things I want to do with them.

My children are 9, 7 and 2. I have had to modify my schedule and get some help with the baby at times. When I go through these flares I try to remember that there will be remission for a while-better days. It might not be tomorrow or the next day but it is coming. I live for those times.

Thanks to everyone that takes time to read this. I know it's long and may be boring. I just want you to know that all of you ladies are not alone, and thank you so much for letting me know I am not alone either.

I am so happy to meet all of you! :)

[tmartha]

Hello, Jakesangel, and welcome to the thread - I marvel, too, at the fact that so many of us are going through the same kinds of things, and at the wealth of understanding and knowledge here. What a relief it is. Having children the ages yours are is a lot of work - I'm glad you get help at times!

You mention the feelings of being in a flare, feeling bad you can't be as active as you want to be - I know so exactly what you mean. Myself, I let guilt get into it, as well as fear and anger and all those lovely emotions.

But it makes me think of something I read about depression - There's the first part - the depression itself - then the second part, which is the fear of the depression, the feelings of guilt about it, which exacerbate the depression itself in a downward spiral so that the second part is actually worse than the actual depression. And only once a person reaches acceptance can relief begin. (From "Peace From Nervous Suffering" -author? sorry) But anyway, all the frustrations and pain of being in a flare is bad enough, but then there's the emotional side of resenting being in the flare that heaps it on, esp. if we're moms or spouses and worry for our loved ones sakes....

Here's an example - I was in a flare this winter and found it very difficult to split kindling for starting a fire in the woodstove in the a.m. Ok, impossible. My husband knew and would make some for me when he was around. But when he wasn't I would just try to. Then I realized I wasn't asking my 16 yr old son to help, and that I didn't want to, it would be admitting weakness, and what if he grumbled about having to do it, I would probably just start crying.....well, so finally, I made myself put my matter-of-fact hat on and asked him if he could chop some up, that I just couldn't do it with my pa acting up, and he said, "oh sure, mom, no problem." Every single time this was his attitude. What I had imagined would be a big deal just...wasn't. Sometimes, my perceptions of what a burden I am to my family are only that - my perceptions. This is not to say that there isn't a very real shift in dynamics and all the difficult parts of dealing with people who don't understand or who do worry about us or kids who don't want to help out, I've encountered that too - but sometimes, I worry way more than I need to.

If only I could remember that ALL the time. If only there wasn't any reason to actually worry. :o

Well, guess I'm chatty this morning - hope some of you others post again to let us know how you're doing! Dawn, Nancy, Janelee, Elaine, emarie, Patti, seedoubleyou, Karen, others if I've missed your name - sending hugs....
Tani

[ouchyk]

Hi Jakesangel,

Welcome. I didn't find your story boring, just familiar & we can all relate. For those with small children I'm sure the challenges are many.

I'm glad you're able to deal with the peaks and valleys, we all live for those peaks!

It took a while but... I've finally come to the mindset that if those who don't suffer can't understand, it's their problem, not mine. I've also let go of the guilt, if I can't do something, I can't. I've learned to say just say " NO ". Nancy style! ( as in Regan ) I used " no " the other day when a suggestion came up that we move Easter dinner to my house. lol. Worry, well I'm working on that too. That's a harder aspect of this disease, well for me anyway.

Tani,

Checking in! :) Hugs back. I'm doing VERY well, thank goodness. The cortisone injections are working excellent and I continue to improve daily, just have to remember not to overdo it. Going for a sleep study, odd thing, not sure if I was use to taking pain meds for so long to help me sleep thru the pain and now I'm use to waking up every hour, like a bad habit? Or if there is something else going on. Getting it checked out, not too concerned as I'm almost painfree. Hopefully starting bio-feedback soon for those days that I might need to pull it out of my new toolbox. I met with my other Beantown buddies last night for our support group strategy, everything is coming together nicely and best of all we had a great time. Thanks again Serge, Ellen and Victoria! xo

Patti, don't forget today is shot day right? I'll have to go and read our last posts before I inject tomorrow lol. This is like a calendar thread for me. :p .

Dawn,

I hope your rheumy has called you by now! You might want to try a new pillow, maybe a temperpedic type? I love Nancy's idea of a massage too, you could ask your rheumy about that. Now I want a massage. :p Rotating ice and heat have been helpful for me in a pinch too. I was given the tip of peppermint tea to counteract the nausea. I hope that it will get better for you.


May all your peaks be many! Enjoy your Holiday!

Karen

[lulu'smom]

I can totally relate to how you see the worry on your family's face when you are going into a flare! I feel like our life has been sidelined by my PA this winter. It is finally getting better due to humira, and I'm up and ready for action!

I hope things improve for you, and glad that you found a place to share stories and experiences. I love it here!


Nancy

[LoriASoCal]

lol, I got frustrated cause I couldn't remember the name of this thread and started a new one. Anyway, long story short, I went to pain management today and got two cortizone shots, sooooooo, we'll see.

[LoriASoCal]

Welcome JakesAngel,

I'm glad to see you are on MTX, I really feel it has helped slow down the progression of the disease big time. It gave me the ability to have many good days raising my kids and doing fun things. I still had flares but for the most part it made life livable, I'm really greatful to it and glad I've been able to take it for so long. I hope you can take it until there is something better.

[ouchyk]

lol, I got frustrated cause I couldn't remember the name of this thread and started a new one. Anyway, long story short, I went to pain management today and got two cortizone shots, sooooooo, we'll see.


LORI!

Good luck with them. It took me a few days before I had some relief, what joints did you have injections in? I hope that you find them as helpful as I have. fingers crossed for you!

Karen :)

[crazyme]

Sorry I've been away. My computer was out of commission last week. Rheumy's intern called me. I told her that I thought my occipital nodes were swollen as I found them on a diagram. She told me to go to my pcp to have a surgeon biopsy them. Well, I think that's crazy. I suspect they are related to the sulfa. I found some reference to it while researching on the internet. I have a pharmacy doc friend who is doing the same. They aren't as painful so that is good news. I go back 5/14 for a blood test so I'll bring it up again armed with my internet findings.

Easter weekend we had warm weather and I felt great for 2 days! Then this morning after thunderstorms, I woke up feeling like crap and was really, really irritable and depressed. I took a warm bath and took my meds so am happy to report I am doing better.

I am really struggling with depression. I feel like I am slipping in my work and I am so tired of this pain. I wake up everyday with a headache and shoulder strain and I don't know why. I am trying not to feel sorry for myself but it is so hard.

Good news is that I am tolerating sulfa from a stomache standpoint. So far so good. I am, however, experiencing headaches, bruises, the swollen occipital nodes, and small red blotches (not p) on my chest. Anyone have similar side effects?

Small world. My MIL has a good friend that has had pa for 20+ years. I got to talk to her this weekend. She gave me some very good insight into managing flare ups with diet. Specifically, she referred me to books called 'fit for life' and 'eat for life'. I am also going to start a food diary to see if my eating habits correlate with flare ups. She said that citris acid really does it for her. Once I get the books, I'll let you know what I think of them.

Anyone else taking supplemental herbs or eliminating certain items from their diet?

Hang in there, girls. We can get through this.

BTW: I just received the 'My Skin's On Fire' dvd. I feel so badly for the people who have p that bad. Mine is still minor, thank goodness.

[ouchyk]

Hi Dawn,

Geesh, I do hope that you can find out what is going on with your shoulder's and about those nodes that you have. Could be that inflammation around the sholder/neck area might lead to a headache. I wish I could tell you more about the sulfa other than it didn't agree with me, it made me seasick..bleh. At least your stomach is doing okay with it, I think it takes a good while to kick in so try and hang in there.

Don't hesitate to tell your doctor how you are feeling as far as the depression, they do understand that too. It stinks to be in pain all the time that can also slowly eat away at you. Are you taking anything for the pain?

I've done a few diets to no avail. I went on a gluten free diet for two weeks and also did a no red meat, no nightshade diet. NADA. Can't hurt to try a diet as long as your not leaving out important nutrients.

Here is a list of alternatives for psoriatic arthritis from the NPF:

http://www.psoriasis.org/treatment/psa/other.php

http://www.psoriasis.org/treatment/psoriasis/alternative/mind_body.php

http://www.psoriasis.org/treatment/psa/alternatives.php

Check with your doctor before beginning any new treatment, whether it is alternative or not. And always make sure your doctor is aware of any natural or herbal product you are using, as some may interact with prescription medications.

Feel better, I'm hoping for warmer days too!
Karen :)

[LoriASoCal]

LORI!

Good luck with them. It took me a few days before I had some relief, what joints did you have injections in? I hope that you find them as helpful as I have. fingers crossed for you!

Karen :)
Hi Karen,

He said he was putting one at C5/C6. I honestly didn't feel anything once the needle went in, they had given me some numbing. Somehow I imagined he'd have to fish around but he was in and out. The other shot was in front of my ear or at least that is where it started off, it seemed like one heck of a long needle that kept going further in but it wasn't so bad. I didn't have any sedation but umm, now that I know what I'm in for I might be taking a lorazepam before hand. It's just nerve racking having needles stuck in my head.

I'm having some pretty significant neck pain today but the doctor said it could take a couple weeks to get the full effect. And of course I over did it for Easter pretending to be Betty Crocker. He wants me back in one month. how are you doing?

[ouchyk]

:D I'm really doing well! :D Thanks.

Last year around this time I was on prednisone feeling great, this year all it took was the injections to get the same reaction. I only wish I had this done sooner. Now I know what works, and works well. I thought maybe I would go off my nsaids lol...er...I'm back on now. I still have other areas that let me know that I have PA but they are so very minor now.

For me it's about 4 days to start taking hold and it only gets better from there, the shots had not worn off entirely from the last time. My right hip was screaming. I think it was amplified due to the fact that the left was was shot and I weenied out of the right one first go round.

I have a list of questions to ask at my next appointment, which is spread out longer now from the last 2, 6 weeks instead of 4.

You're brave I didn't look at the needles. lol. Did you have it done under flourescopy? ( sp ). I HOPE HOPE HOPE that they are helpful for you, then you can keep the shots in your " toolbox ". :)

Karen :)

[LoriASoCal]

LOL, I didn't want to look at the needles, I opened my eyes and there it was! No Flouroscopy.

:D I'm really doing well! :D Thanks.

Last year around this time I was on prednisone feeling great, this year all it took was the injections to get the same reaction. I only wish I had this done sooner. Now I know what works, and works well. I thought maybe I would go off my nsaids lol...er...I'm back on now. I still have other areas that let me know that I have PA but they are so very minor now.

For me it's about 4 days to start taking hold and it only gets better from there, the shots had not worn off entirely from the last time. My right hip was screaming. I think it was amplified due to the fact that the left was was shot and I weenied out of the right one first go round.

I have a list of questions to ask at my next appointment, which is spread out longer now from the last 2, 6 weeks instead of 4.

You're brave I didn't look at the needles. lol. Did you have it done under flourescopy? ( sp ). I HOPE HOPE HOPE that they are helpful for you, then you can keep the shots in your " toolbox ". :)

Karen :)

[lulu'smom]

So I thought I'd check in with all of you before I go to Mammoth Mountain (yes the one with the avalanche) for a few days.

I went to my Rheumy yesterday, thinking she'd say skiing is a no no for me. But she said go for it if I feel up to it. I've been fatigued lately, but I think it was stress related. Now that I'm on vacation, adn getting ready to get away I feel pretty great. She also raised my Humira to 1x/week.

Anyway, hope everyone has a good week.

I'll check in when I return.

Nancy

[tmartha]

Hello everyone - have a great vacation, Nancy - where is Mammoth Mountain? Have fun skiing and hope you get a lot of relaxing in, too.

Are you feeling any better yet, Lori? I hope they help you as much as they've helped Karen - and what is flouroscopy? (so much to learn)

Sounds like you're getting somewhere with your research, Dawn - I'm on ups and downs lately with my mood - sometimes fine, sometimes so overwhelmed - re-started mtx last week and just had my second dose Sunday and I know the first couple weeks I'm on it it makes me exhausted, so I try to remember that that's a huge contributing factor. I'd be overloaded even if I didn't have pain and fatigue in the mix - business gets twice as busy for the summer so preparing for that and a graduation party to plan and invites to write (our first! yikes!) and all that stuff.........

sorry - a little stressed this afternoon. :o ok, I'll hang in there...

Tani

[lulu'smom]

Hi all! Mammoth Mountain is in the Sierras in California. It is beautiful here. My arthritis is flaring a bit, but it could just be from the cold or lack of sleep or 6 hour drive? I haven't gone skiing yet. It is hard for my husband to understand that I don't feel like I'm missing out. He also keeps telling me how he is stiff/sore when he first starts and feels much better when on the slopes. But then he did say he has no idea how PA feels. I'm glad he admitted that! I feel like the rusty tin man!

I'm also so tired, maybe because of the high altitude (9000 feet) or just normal PA fatigue. Anyway....


Tani, sorry to hear you are feeling exhausted. I hear mtx really does that! Hope you can get leveled out soon with your energy levels.
Hope everyone is feeling good and keeping stress low. I think that is really a trigger (at least for me!).

Talk to you all soon,

Nancy

[crazyme]

Hello,

Sorry I haven't been keeping up. I have thought of logging on often but this month has been crazy. I see that the boards are changed. I had a hard time finding this post.

Hope you are all still logging in. I'd love to hear from you.

Elaine: How is the work situation? Better I hope.

Tani: Thanks for the PM. I promise to keep posting even if it's harder to navigate. Too many good people here to not give it a try.

Sulfa finally kicked in. PA hasn't been ruling my life lately. While I am not back to normal, I actually have good days now. The swelling is significantly down and the progression has slowed. I don't know if it's the sulfasalazine or if it's the spring weather but I at least have mild days.

Today is rainy and I woke up with the old aches/pains throughout the body. Reminds me of what every day felt like a few weeks ago. It is definitely encouraging. I see my rheumy Monday. I'll let you know how it goes.

The p is getting worse, however. I haven't made a dermie appt yet. I was waiting to see if I was going to bumped to MTX first. I think that it's safe to get some ointment. Summer is coming so the long sleeves will have to go!!!

Are any of you going to the conference in August? I am considering going but I haven't decided yet.

Good night, ladies. Hope you can find this thread...
Dawn

[Caki]

I'm thinking of taking the sulfa, so I'm very interested in how it works for you. I hope you do very well and it gets better as time goes on. Best wishes and good thoughts!

[crazyme]

Hi, Caki

I have surprisingly been able to tolerate the stomach irritation. I have definitely had some side effects: swollen lymph nodes, skin rash, mouth irritation, and stomach upset. However, they were all pretty mild and have subsided. In terms of it helping the swelling, it has been wonderful. A definite improvement from where I was 2 months ago.

Let me know if you have any other questions.

Good night.

[Caki]

Thanks, Crazy. I'm glad you've gotten through the side effects and that you are doing pretty well. I have a big problem with swelling in various areas and with fluid on my knee. When I next see the rheumy, I have to go on something. I would like to try sulfa before MTX. He's pushing MTX and I do understand why, but I don't want to take it if I can avoid it, for now anyway. I am concerned about the P, but I'm clear right now, so it's easy to be willing to try the sulfa. I had an injection in the knee a month ago and have been on prednisone, but I just finished that regime. I'm so hoping the P stays away for a while. It's done that quite often. I had it years ago and then not for about 3 years. It came back and then after the prednisone pak, was gone again for over 6 months. We'll see. Thanks so much for your response and willingness to share. I know drugs work differently for everyone, but it's so nice to hear of other people's experiences.

[wildflowerAnn]

Thanks CrazyMe for finding this thread and bumping it to page one. I subscribed to the thread (per the new format instructions), to refer to it as each new joint ache appears. This thread is great for detailed information about the beginnings of PA!
Ann

[tmartha]

lol lol....

the whole time I've been reading your username as rhyming with enzyme...crazyme....enzyme....I just didn't get it....and it's been months (my daughter just asked why the heck I was laughing so hard at the computer...) :)

Aaaaah...nice to be here with you all. Thanks for the bump, Ann, and for posting again, crazy you, (hee hee), and caki, look forward to getting to know you better.

Glad to hear you're feeling better, Dawn. But bad about the p.

Hey folks - PA buds in the house!!!!!!

You all rock.

Tani

[lulu'smom]

Thanks for bumping this thread! I have subscribed now also!

I'm happy to report that at 12 weeks into Humira my PA is all but gone and my skin is doing really well> There's hope out there!

Hope all the Mothers have a wonderful and pain free Mother's Day.

Nancy

[patti2957]

I'm glad the Humira is working so well! Has it resolved the fatigue as well? I keep looking for answers on that, seems to be my worst. But, I can tell a couple of days after my shot, that it is working today. Just rode my bicycle with my son... that's proof of something:)
Glad to 'see' all of you! Let's keep this thread going!
patti

[SandraJean]

I'm finding pretty good results with Humira also, but have been having increasing trouble with my left shoulder and neck. My Humira shot day is tomorrow and hope it may help more.

Good luck and I agree to keep this post going.

Sandy

[lulu'smom]

I'm glad the Humira is working so well! Has it resolved the fatigue as well? I keep looking for answers on that, seems to be my worst. But, I can tell a couple of days after my shot, that it is working today. Just rode my bicycle with my son... that's proof of something:)
Glad to 'see' all of you! Let's keep this thread going!
patti

The fatigue is gone! I'm just left with the normal fatigue of having 2 small kids, working and doing my normal life. I also think my depression has lifted quite a bit!

[baldwin123]

Hi Everyone... this question touches home! and during a flare, I worry about how fast PA will progress as I am only 38! I have been dx with PA for 1 1/2 years, am on Humira for 15 mo now and just added Sulfazine last week as the Humira doesn't take away inflam and jt pain completely (though 2 months off it while I sorted out how to afford it after 1 year on it convinced me that it is indeed helping the arthitis part of PA somewhat!)- meth is an option with humira but my husband and I haven't ruled out trying for another baby and sulfazine with humira seems the safer option if I try to get pregnant- .. and then of course I always wonder if I am complaining too much and should just tough it out? Anyways, as far as meds go, I found that the Arthritis Foundation has a 2006 drug guide pamphlet which you can request for free from them which lists the different classes of FDA approved drugs used for the treatment of the arthritis, including PA- I don't think the humira has helped my psoriasis much at all- I alternate between ultravate and vitamin d lotions for that and am grateful for sunlight and soccer season to help my skin... at this time the joint pain outweighs the skin discomfort 80% of the time... but since its mainly my fingers and toes, I feel like a baby complaining about it! And I am always tired! Thanks for this message board though to know I am not the only one out there! Crazyme- just fyi- my sed rate is not elevated and my bloodwork doesn't look terrible though my joints show changes- my rheumatologist says that I would have been difficult to diagnose with PA if I did not clearly show the joint atrophy and sausage digits and have a history of psoriasis- for several years my primary care physician did not refer me to a rheum despite my joint pain complaints because my bloodwork was normal... the psoriasis was just brushed off completely as not even an issue!... when I finally got in to a dermatologist for the skin, he immediately suggested I see a rheumatologist for PA and I was diagnosed... Keep talking to your doctor about your symptoms and don't be afraid to be completely honest with him or her as it might take time to find the best treatment for you! Take care everyone!

[patti2957]

Good morning:
Please don't think you are complaining or that you should tough it out. I was told by a competent person that feeling guilty allows us to pretend we have some control over this illness (i.e., if it's our fault, we can change it, and get better results). And, naturally we don't. So, PLEASE don't beat yourself up! If I had a dollar for every time I've had to stomp out a thought like that, I could buy a year's worth of Humira.
Also, oddly enough, my rheum took one look at the patchy skin on my palm and suspected PA, without even knowing of my family history of P; of course, bloodwork is of no value for diagnosing it, only ruling other illnesses out.
I wish we could all get together and write a 'handbook' for rheums, primary care and the newly diagnosed. The illness is just as cruel no matter your age or activity level.
I sure know what you mean about being tired ALL the time. I hate that others have this but thank GOD we aren't alone; you aren't to blame and you have more courage than most! Take care and keep coming back for support.
patti

.. and then of course I always wonder if I am complaining too much and should just tough it out? .. but since its mainly my fingers and toes, I feel like a baby complaining about it! And I am always tired! Thanks for this message board though to know I am not the only one out there!
for several years my primary care physician did not refer me to a rheum despite my joint pain complaints because my bloodwork was normal... the psoriasis was just brushed off completely as not even an issue!... when I finally got in to a dermatologist for the skin, he immediately suggested I see a rheumatologist for PA and I was diagnosed...

[baldwin123]

thanks Patti!
though I wish everyone who reads this could be cured of all the aches and pains and p, I am grateful to find a place where so many people understand! Take care-
Jen

[tmartha]

Hello, all - I'm bumping this because I know we have a couple of new posters with pa, and because I miss you all!

So, my update...

I have made the decision to cut back at work. My husband and I own and operate a restaurant (with a heavy emphasis on the operate!) and this is a huge leap to make. Since we opened nearly four years ago, I've been there on avg. 40 hours a week (not bad, for this business), and summertime is always twice as busy as the rest of the year. A very good thing - but bad when you have pa and are trying to work as though you don't. The last two summers I work and come home and crash. You know what I mean - crash - drained, frazzled, emptied, in pain. Nothing left for home. And we've got four kids - the oldest of which has just graduated.

Mtx is controlling my joint pain pretty well, but fatigue is really a bugger. As I was using up all my energy at work the last couple years, I let a lot of other parts of me go. And I've resented that, grieved over that, fretted and thrown temper tantrums about that (as some of you know!). Well, now, I'm reclaiming it. I want to finally settle into the home we moved into two years ago. I want to garden again, and paint again. Mostly, I want my family to have the best of me, instead of always the leftovers.

So, the business is stronger, my hubby says it's time, I'm cutting back to 3 days over the summer. And maybe, even less. Maybe I'll be a consultant! The last couple of weeks, this idea has made me quiver with fear, worry, guilt, and more guilt - but it's really hitting me now, this is the right path for me to take.

Who knows what the future may bring, but this is the page for today, for me.

Hope to hear from you folks - how are you doing, are you getting the treatment you need, are you being good to yourself? Sending warm wishes -

Tani

[crazyme]

Tani,

Thanks for the bump. How do you prescribe to a thread? I can't seem to figure it out. I definitely don't want to lose this one again... I commend you on your decision. You and your family must come first. I have to remind myself of that quite often. My hubby and I have this conversation often. I feel like I give my family the leftovers as well. I have to slow down at times. The past few weeks have been crazy busy (thus, crazy me... don't know how I came up with that name) :). I traveled for business, my hubby traveled for business, we had bday parties and out of town guests and communions every weekend. Ugh. And Saturday we are having 30+ people for our youngest son's first bday. Crazy busy. But lots of fun. I asked my husband tonight, "do you think I'm more tired than most? Why can't I stay up past 9:00PM?". He said I've always been tired. Is that the p and pa thing? I just run and run all day and fizzle out after the kids are in bed. I've been too tired to log on to my computer!

Baldwin: good luck with Sulfasalazine. I am doing pretty well on it so far. A definite difference. The sausage digits are almost back to normal. I am wondering if I will ever be able to straighten my right index finger again. It is bent now. If this is permanent, that is nuts because it was only swollen for about 3 months. PA is such an awful thing.

But I am not going to let it get me down.

Lulu's mom: so glad to hear the depression is lifting. I think that the warm weather is lifting my spirits as well.

Well, I am up way, way past my bedtime. UGH!

good night, all!

[patti2957]

Hi Dawn, aka crazy you,
If you want to be notified when there is a new post on this thread, look at the toolbar across the top, find thread tools, and in the drop down is a 'subscribe' option; then you will be notified by email whenever a new post arrives. I'll have about 4 new emails after this morning:)
I don't recall seeing anywhere how old your kids are. Are you still traveling for business? How active are you now? How fatigued? My mtx days are over, thank God!!!, it was making the fatigue worse! It hasn't been long enough to see if/how my PA will change. The Humira (three months) works and the doc thinks it will hold. Then, I start weaning off prednisone (my biggest crutch). But I still don't work, aside from a few hours a week. I can't even imagine what that would do to me. And Tani is being very prudent by cutting her schedule, so she'll be in human form for her family! I'm wondering how much others' activity levels/work lives, etc. have changed...
Take care and keep posting all.
patti

[tmartha]

The other nice thing about being subscribed to a thread is that once you've subcribed to it, whenever you log on to this forum you can click on "quick links" at the upper right, and then click on "subscribed threads". That way, if the one you want is at the bottom of page two, as this one was yesterday :( you can find it more quickly. :)

Well, did you hear me nodding vigorously, Dawn, when you said you can't stay up past 9 p.m.? No matter what I do, it seems I hit a wall sometime in the evening. I always have been more an early bird, but it's been getting more and more pronounced. Not just that I have a little less energy come 5 p.m. - but I am all out. Nada. Zilch. Taking it easy earlier in the day is helpful, if I've got to go somewhere in the evening, but so far, I haven't found a good antidote for the evening slide.

One year old! That's exciting - and you ARE a busy woman, aren't you! I don't remember either how old your kids are. So answer Patti, and I'll listen in. :) (Our oldest is graduating - we just had her party on Saturday - WHEW! - and our youngest is 7.) And hooray - the sulfa is helping you, that's very good news.

And hooray for lulu'smom too, so glad you're feeling so much better! Patti....human form.....what is that again....?!? I've had two forms for the last two years - go go go, and mush. How smart is THAT. Not very.

Glad to hear from you, Dawn, Patti - and all of you - enjoy the rest of May, all - it's beautiful up here - incredibly green and fresh.

Tani

[Stillworking]

I am also new here, so quite a few of us are learning and getting answers to questions that the docs don't have. PA can progress very very quickly in some people and only mild stiffness (minicking oteo) in others. The Rhuemy's seem to be treating the disease very aggressively to prevent as much joint damage as possible. I have spoken to the rhuemys at work and this is what I have been told. Tendonitis and synovitis are common and this disease seems to love the hands and feet. Withing 6 months of being diagnosed with only 3 joints involved, I was barely able to walk. I wish they had started treating this aggressively when I was first diagnosed, so just maybe, I would not have spinal compression with such limited motion and not as much damage in wrists, shoulders, and feet/ankles. Remicade is working for me, but slowly. You need to find a doc that you are comfortable with and trial and error will find the right treatment for you. Don't be afraid to ask questions and get a second opinion if you need to. Docs are not all knowing. They learn a great deal from people like us. Good luck and don't give up.

[ouchyk]

Hi Pa peeps, :D

Tani, thanks for bumping up the thread with information on how you're doing, glad to see that you're taking some time for yourself and enjoying spring.

Patti, is it this week? lol. Kidding I know it is. viva la humira. Good luck staging off the prednisone, I know how hard it is.

Dawn, I hope the sulfasalzine continues to be helpful. Have a great birthday party weekend. Save some spoons for yourself.

Jen, I hope that the sulfa along with humira gives your pa a kick in the hiney.

Nancy, so happy to hear the fatigue is lifting and taking the depression with it!

Stillworking, I'm glad that your were finally dx, only sorry that you have suffered damage, it can happen quickly in some people geesh. I hope that remicade offers great relief for you.

I'm still in a very minor flare but getting better as the cortisone does its thing, I'll be running around again by the weekend, I've been super busy for the past few weeks doing too much, hard to find that right balance when you're feeling well. Injections of cortisone not holding as long as the dr's would like ( 6-8 weeks ) so we're looking at another procedure. Starting up PT again with the therapist that is in the know and I have worked with many times before, we are hopeful this is the missing ingredient for longer lasting relief, so perhaps I won't need this zapping they are proposing and continue on the original plan of action.

I was a tad dismayed as I had a new resident at the last appt. She asked me if humira was a hormone replacement medication :eek: cripes. She suited up & prepped me but I wouldn't let her touch me till the doctor came in. I have had the same pain management team for the last few months and wished it had stayed that way, as this one is changing the game plan and I'm not so sure I agree with it, it's my call anyway!...that said, I remain optomistic as the injections honestly have been my saving grace.

Wishing you all comfort. Send warmth, we still have the heat on at night.

Karen

oops Caki, Anne and Sandy, I hope you are all hanging in there too, sorry I just read back on the thread and noticed I missed a few people..time for bed!

[crazyme]

Hi, all

My youngest son, Cole, just turned one. My oldest son, Jack, will be three in July. Whew!!! They are working me over. We are very blessed and very tired. :)

Patti: Thanks for the tip. Now I can find you guys.

Karen: I think we know more than most of the docs. Hormone replacement? ha,ha.

Stillworking: Nice to meet you. I know what you mean about the fast progression. My finger was only swollen like a sausage for about 3 months and now I can't straighten it all the way. No one else can notice it but me. I am still in constant pain but it is mild now. I just worry about my ankles on my right foot. They are so weak now...

Good news: my bloodwork came back normal. I can't believe how well I have tolerated Sulfa. I heard so many horror stories with the stomach issues.

I have been so bad. I started feeling better and I'd forget to take a dose of pills. I did it again today. When I do that I am hit with pain again. It doesn't take long for me to remember what it felt like w/out the drugs. I have been in pain all day but I know that it's because I have been bad. One thing I've learned is that you have to constantly take care of yourself. It is unforgiving.

The fatigue really bites. I hate being tired all of the time. I am going all day like the energizer bunny but then I hit a wall. Tani, I am like you. I don't get tired gradually. One minute I'm fine and the next I cannot do anything... I just collapse. My hubby makes fun of me. It isn't fair that he doesn't know what it's like. It's a major effort to just get through the day.

I have to tell a story, though. We took the kids to the zoo last weekend with friends. Friends that I hadn't told of my pa. The weather was warm and I was feeling fantastic. We walked and walked. And all of a sudden, my ankle started that nagging throbbing. Then it felt really weak. Then I was limping. I found it hard to keep up and I was too embarrassed to say anything. Then I was nervous because I thought that I would end up having to be wheeled to the car in my sons' wagon. Then I heard my husband say, "Well, I think that we should wrap it up. I think my wife's had enough for the day". It was a simple statement but I was so grateful. He was paying attention and I didn't even have to say anything to him. He was looking out for me. I thought it was sweet.

OK, it's way past my bedtime so good night, everyone.

Dawn

[baldwin123]

Hi Dawn, Tani, Karen, Patti and all!

Thanks for the info on subscribing!

Dawn, I loved